Monday, September 29, 2014

I seriously did not realize it had been THAT long. So much to talk about, so I will try to jump right in. My writing time is rare now a days, but we will talk about that in a few :)

Alexis is (currently) doing fine. I refuse to say great and jinx anything because the past few months have been beyond stressful. Over the past year we have been battling pouchitis non stop. We would go through the Cipro/Flagyl course and her symptoms would bounce right back. My first indicator of pouchitis was always "holding" (Not sure what else to call it-- this is what Alexis and I refer it to!) Where she will stop whatever she is doing, cross her legs and stand there "holding" herself for about 30 seconds or so. She tells me she feels as tho she has to go to the restroom very bad, and holding is what she does to prevent having an accident. Eventually the symptoms progressed into your more well known pouchitis signs such as: increased frequency, decreased appetite, night time incontinence, fever and pain in her bottom. I always felt like a complete failure every time I had to take Alexis back to the hospital for more meds.

After our last visit to Childrens, I knew Alexis would be put on permanent medication for pouchitis. However, I refused to go down this road without putting up a fight. I spent so many hours googling and reading forums on different methods other people have tried. SO many failures, but I read about so many people who had success in treating their chronic pouchitis. I had so much hope and determination to beat this. I had been so depressed after scheduling Alexis' GI followup, that I was seriously making myself sick coming up with various (horrible) things that could happen because of the chronic pouchitis. I dont know why I do it to myself-- I would give anything to worry about her college fund.. and what career choices she will make.. but I just can't get past the huge IBD wall thats standing in my way.

I hope one day that changes. But until then, I will do everything in my power to keep Alexis healthy. I will try and touch base on everything I have started with her.

I have recently purchased Biocidin drops. Not to much info out there from j-pouchers so I will make sure to update everyone on how Alexis does on it.

We have also started giving Alexis her VSL #3 (DS) in enema form. I will say it has not been fun AT all, but I feel as tho this has been the most helpful change we have made. I really feel as tho her pouchitis issues stem from improper emptying of her pouch and the enema really helps clean things out. We recently purchased a "squatty potty" stool as well, so I hope that helps her out even further.

Dietary Changes
I had planned on going full SCD (for a full explaination of the SCD diet, click here! It has been a lifesaver for so many), but after all the other changes we had made I decided I would be a little more laid back as long as we stuck with everything else. However, I did make quite a few changes.

Eliminated unnecessary dairy. Personally, I am lactose intolerant.. so I am well aware of "safe" foods. This was a little touch since Alexis is a huge milk drinker.. but we have been successful in making the switch over to almond milk. We still allow yogurt as I mix in additional vsl into it, but no more than 1 a day.

Limited amount of sugar- Alexis has a huge sweet tooth, so I knew this was a problem we needed to correct. I have been making more of her favorite snacks at home instead of buying them and skipping out on all the extra COMPLETELY unnecessary sugar! We still allow SOME snacks... but in moderation (and defiantly not everyday). No more kool aid, sugary juices or fruit stored in syrup.

Carbs- Alexis has never been a big carb eater, but I still have switched over to organic, whole grain ANYTHING instead of buying the refined, more processed (and unfortunately) more delicious counterparts.

Shopping has become more difficult. I will buy sugar free, gluten free, dairy free and/or organic whenever possible. I shop for a majority of our produce at a local farm that just so happens to be a 5 minute drive from my house. I am making more clean food at home instead of the processed boxed dinners. We still eat out, but will keep those instances few and far between if possible! I have also been packing Alexis' lunch everyday so I know exactly what she is eating away from home.. and that it is "safe".

Making all these changes have been fairly expensive, but totally worth it since it is not only benefiting Alexis-- but the entire family as well. I hope to update in another 6 months that she is doing very well and has made even more progress!

Now, and update on our everyday life.. Can you believe Alexis is almost 8!? (I can't! Seems as tho she was only a baby just yesterday..) She is in the second grade and recently started gymnastics! She is around 4 ft tall and is weighing around 60 pounds. After being stuck in size 6 for the past few years.. she has finally graduated to a size 7/8 and sometimes even an 8/10! She learned how to ride her bike without training wheels a few months ago and has become quite obsessed with making normal everyday objects for her American girl dolls. She loves watching youtube video tutorials.. so I was planning on making a video to post directly to the blog with all of her personal feelings regarding her jpouch to date.

We recently moved into our *forever* home and Alexis finally has her own bedroom, which she is ecstatic about. Hard to believe we went from a 1200 sq ft house ( 1 and a 1/2 bath) to a 2500 sq ft house with 2 full and one half baths! As a family of 5, we were bursting at the seams so this move has been such a blessing. I felt as if giving Alexis her own space was important, and the extra full bath has been (and will continue to be) a lifesaver with 3 girls :)

About Me

I have been with my husband for over 7 years, and together we have 2 daughters. Alexis is 5, and Kyleigh is 2. A few months after the birth of our second daughter., we learned that Alexis had been diagnosed with Ulcerative Colitis. I am here to share our journey.